Byline: Rose Morgan
There are pinpoints of time, probably not so many of them, when you know your life has changed for ever: Friday 16 October 2009, at 10.30am, was one of those moments for me. We sat in the GP's surgery - me, my husband and our 14-year-old son Jake, who, in just four days, had transformed from his chatty, laid-back self into a skinny, exhausted shadow. He'd had flu, but wasn't getting better. That morning he seemed ill in a different way; he was weak and sleepy, and had started being sick after eating or drinking. I think, deep down, I knew something was very wrong because I suggested to my husband that he came to the surgery too.
The doctor asked questions and examined Jake's chest, his throat, all the usual fluey things. But suddenly the diagnostic probing headed off in a different direction, one that felt instantly alarming: was he breathing strangely? (Yes.) Had he been thirsty? (Yes, now you come to mention it.) Going to the loo more? (Jake confirmed this.) Did his breath have a sweet, pear-drops smell? (Yes again.) The GP slipped out of the room and returned with a skin-prick blood-test kit. Seconds later, he looked up from reading the monitor, almost shyly, not wanting to deliver the news: 'Jake has diabetes,' he said. 'He's a very sick boy. We need to get him straight to A&E.' Our boy, our handsome, healthy, witty boy, had a chronic condition, and we couldn't make it better for him.
Juvenile type 1 diabetes, which is what Jake has, is on the increase in the West and nobody really understands why. An auto-immune condition, it occurs when the pancreas simply stops producing insulin, the hormone that allows your body to access energy from food. Without insulin, the glucose in your blood rises, without giving your body any energy. A normal blood glucose level should be between four and seven; when he was admitted to hospital, Jake's was 25. The body begins to provide its own solution, breaking down existing fat for energy. That keeps you going for a while but the side effect is that the body produces ketones - acids which are toxic to the body. Jake's fast breathing was his body's attempt to expel these toxins.
The diabetes had probably started about six weeks earlier, but Jake's flu had kicked it into crisis. This is often what happens. Between 2006 and 2009, cases of children admitted through A&E with the sudden onset of diabetes rose by eight per cent to 3,300. There are 25,000 young people in Britain with type 1 diabetes. Alarmingly, some researchers predict that the incidence of type 1 in under-15s in Europe could rise by 70 per cent by 2020. Casting around for the trigger, beyond a genetic predisposition, they cite environmental factors, diet, viruses - but their explanations are largely conjecture.
Snuffling around the house, Jake had looked thin; now he looked emaciated. That's because he was: he was beginning to starve to death. I felt guilty; I felt I'd failed to spot the telltale signs - the thirst I'd attributed to him being a growing teenage boy; the thinness I put down to lankiness born of a growth spurt. I felt negligent.
By the time we arrived at hospital, Jake was so weak he could hardly stand. A flurry of blood tests, drips and drugs ensued. 'You've been told what's wrong with Jake?' asked a registrar, and she began describing what it meant. This is just the start, she said, of learning about the condition. The message was clear: there was no quick fix; the doctors were gently getting us used to the idea of long-term management.
Jake had been sick again, and dozed off, wrapped in blankets. Severely dehydrated, he was hypothermic; his veins had collapsed, for the same reason. As I looked at my son, I began to sob. The young doctor put her arms around me. 'I know, it's crap,' she said. 'But this is the illest he will ever be.'
And those words, although not comforting, were wise and kind and honest. I'm glad she admitted how it was. You get fed up with people telling you how OK it is. You want to say, 'You try dealing with it, then'. It is a horrible condition. Over those first few days, we would go to bed and weep for our son's lost health. Jake's life was going to be more difficult than we would have hoped, and I would have done anything to change it.
'You do know,' the consultant said to Jake, gravely, when he was discharged from hospital, 'how important it is to take your insulin. Without it, you will die.' Our son's life was now totally dependent on this treatment, this horrible bag of drugs and needles and leaflets that we left hospital with. Young people feel invincible - it's one of the wonderful aspects of being young. Jake will never feel that way. He is very aware that life is on leasehold, not freehold.
As the doctor told us during that first day in hospital, the condition Jake was in, which is called keto-acidosis, when type 1 diabetes goes undiagnosed and unmanaged, should never happen to him again. Making sure it doesn't is where we are now, and that's not easy for a 14-year-old boy.
We left hospital after three days. Jake had regained much of his lost weight (he'd shed more than a stone, half of which was caused by dehydration) and was eating like a horse, as his body refuelled. When you tell people about diabetes, they focus on the injecting of insulin - how awful, they say, to have to do all those injections. Yet none of the people with diabetes I've met seems to mind the injections, especially as they are now delivered through easy-to-use 'pens'. Helped by a wonderful team at our local hospital, Jake was instantly fine with it. He was also taught to test his own blood glucose, using a finger-prick device and monitor. This he finds more annoying, as it's more painful than the insulin injections, and needs repeating several times each day.
The real tyranny of diabetes is that it totally alters your relationship with food and your confidence in your body's ability to do what it needs to stay alive. Food, for the first few weeks, suddenly feels like the enemy. When you eat, what you eat, and how much must all be monitored. The consequences, if you get it wrong, are that you get very, very ill. We saw raiding the fridge, sweets at the cinema, takeaway pizzas - those standards of teen behaviour - as forbidden fruits.
Jake would have a raging hunger before bedtime, but couldn't eat anything that would raise his blood glucose. I made him huge fishy salads late at night that he'd munch his way through. Some days, eaten up by frustration at being caged by dos and don'ts, Jake would pace the house. We knew how hard it was for him to accept his situation. And that it was for ever. Only once did he say anything approaching a complaint: 'It just makes everything so much harder.'
A week after we left hospital, it was half term and we were all at home. To have our brood all together, to make the two-hourly (as they were then) blood glucose prick-tests a family affair (trying to guess Jake's level became a game), to record everything he ate, and his blood glucose levels, in order to confer with the consultant twice daily on how much insulin Jake needed, was comforting. It felt like a return to when the children were little, safe in the nest. But it was temporary.
The next week Jake went back to school and I was terrified. He'd been put on a twice-a-day insulin regime, but this required him to eat at the same times, and have the same amount of carbohydrates, every day. We instantly ran into problems: the morning dose of insulin dealt with breakfast, but a second wave of the dose would kick in at 11am, and if Jake didn't have a substantial snack then, he would have a hypoglycaemic attack - a hypo - which can induce a coma. Jake became adept at spotting the signs: light-headedness, shaky hands, followed by a headache. He was having to munch glucose tablets every day to stave off the hypos.
Both my husband and I took to texting him during the day: what was your last level? How are you feeling? Jake hated this degree of parental concern. He hated having to eat snacks he didn't want. Mostly he hated the fuss of the whole thing. It was hard for him, having hypos in class, checking his blood glucose on the bus. The school was supportive but I couldn't relax until I saw him again each evening.
In November, Jake decided to switch to a different insulin regime, used by adults and older children. You inject every time you eat, and must calculate the carbohydrate content of every snack or drink, but it gives people with diabetes much greater control. With the help of our wonderful specialist nurse, Jake switched to this regime, called basal bolus, just before Christmas - he wanted to enjoy lie-ins over the holidays without having to worry about breakfast, and he wanted to be able to eat a massive Christmas dinner, which so long as we calculated the right amount of insulin, he could.
This control has made a vast difference to Jake. His blood glucose levels are good, which is important in reducing the long-term health problems associated with diabetes - it can impact seriously on kidney and heart functions, eyesight and circulation. Jake feels he is master of his own destiny again, that he is controlling the diabetes, not it controlling him. Of course, he has to shoulder a huge responsibility to get the calculations right. He wishes he could forget all about it, but he can't. And so he copes: he went with friends to a Chinese takeaway and had to inject himself in the park where they ended up eating. We went skiing for a week, and he injected himself on the slopes at 8,000ft.
Jake will be 15 soon. We haven't got to the drinking and all-night parties yet, but I'm dreading it. Yet I want my son to have a normal life, to have some wild times. Negotiating the next stage of growing up with diabetes might be the trickiest of all. Alcohol in moderation is manageable, but binges would be disastrous. Gap-year holidays are already haunting me; I have visions of lost backpacks containing vital insulin. But as Jake tells me, he's more organised than I think he is.
Diabetes used to be called the silent killer, stealing up on people, with no insulin to transform their life chances. How lucky we are to live where and when we do. Jake's life is good and he's happy. His friends are cool with his illness - I don't think they have deep and meaningful talks about it, it just is. I don't think he even considers his diabetes as an illness - it's just an irritating reality of his life.
There is talk of a cure for diabetes; stem-cell research might yet allow for the pancreas to be kick-started back into life. And the 'artificial pancreas' - a closed-loop pump that can communicate with a blood glucose monitor in order to release the right amount of insulin - is said to be not far down the line. We'll see. Jake doesn't like the idea of a pump strapped to his body: he's his own man and determined to stay that way.
On that October morning when my life changed for ever, something more important happened: Jake's life changed for ever. And that, as a mother, is what I have to keep reminding myself. However anxious I am, it's about him not me. So, in the nicest possible way, as my son would tell me...back off!
I'm doing my best, Jake.
DIABETES: THE NEED-TO-KNOW GUIDE.
Type 1 diabetes is caused by the immune system attacking the insulin-producing cells of the pancreas, so the body cannot regulate blood glucose levels on its own.
Type 1 diabetes usually appears before the age of 40, especially in childhood. About 90 per cent of people who develop type 1 have no relative with the condition.. Type 1 diabetes is treated by insulin injections, a healthy diet and physical activity.
Type 2 diabetes typically develops after 40, but can appear earlier. The pancreas still produces insulin but not enough, or the body is not able to use it effectively.
There are more than 2.6 million people with diabetes in the UK; it is estimated that up to a further half a million people have the condition but don't know it.
For further information contact the Juvenile Diabetes Research Foundation (tel: 020 7713 2030, jdrf.org.uk) or Diabetes UK (tel: 0845 123 2399, diabetes.org.uk)…